Life with autism, breast cancer and other adventures

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Monthly Archives: January 2015

By some miracle of fate, the laundry piles here on the red couch are minimal today, and I just checked CNN to see what was going on in our world. Guess what – there is a blizzard on the east coast! Ok – no disrespect to my friends (& family) from the east – you’ll be shoveling for some time after this one is done, it’s definitely in the “large” category when it comes to blizzards. Yet, from a Minnesotan standpoint, we silently shake our heads and give an ever so slight sneer (it would be rude to be vocal at all – that would not be appropriate here in the land of hot dish) at the 24/7 coverage of an otherwise average large winter blizzard on CNN. Then again – it’s all relative, isn’t it? For us, this blizzard business is no big deal, for NYC, it is apparently some sort of catastrophe. The tables could easily be turned if there were a nationwide shortage of cream of mushroom soup or no butter for sculptures during our beloved state fair – it’s all relative.

I’ve had a major case of the “blahs” lately that has made some of my parenting moments particularly challenging & overwhelming, and has left me questioning some of life’s bigger questions (this is never wise, is it?). Namely – am I doing what I’m supposed to be doing? I never envisioned my life like this – am I fulfilled? Am I making a difference, and parenting by example? Hmmm . . . . some of these keep me awake at night (hard to know if it’s life’s bigger questions or hormones – still, I’m awake) thinking about how I thought by now that I would be back in the work force, at least part-time. Many of my peers are, as their kiddos with ASD are hanging in there as they get a bit older, and for them I’m truly happy. Many of these kids I’ve known since they were barely walking, and it’s incredible to see how far they have come – some now starting their journey into high school – it just blows my mind really thinking about the early years and where we all started. But somehow and somewhere we all took different paths, and for right now, the path that my offspring are on is unpaved and requires a great deal of support to navigate. I thought and had hoped that would not be the case, and with that comes some occasional sadness that I need to work through.

Just like anything – autism and the way it affects our family is processed in stages for me. Most of time, I’m fine with it – it just is what it is. But sometimes, I get sad, wishing our kids didn’t have to deal with the challenges they face, and that our lives would be different. Not necessarily better – just different.

It hits me at weird times – like when my two middle school boys react in vastly different ways to a simple question about school (H=amusement, E=anger), and I think to myself, is this a puberty thing, an autism thing, or is this because they have my ½ of my genes, and I’m kind of funky? Or when Ada has an hour long fit because I didn’t know the difference between a fox and a coyote – whatever! I know this has all got the best of me because my patience has been almost non-existent lately – both at home, and in my volunteer work. Last week, I was attending a committee meeting with mostly Science/Business types, and I just completely blurted out completely inappropriate comments about cage fighting & the merits of cookies and caffeine on Friday afternoons. Believe it or not, both of these, while inappropriate, were contextually on topic. That said, the long, blank stares were an indication that a) it was time to up my vitamin D once again, b) apple does not fall far from the tree and/or c) I’m never going to be asked to serve as a parent representative on any sort of committee again (though even if I’m a bit weird, I have to think some humor is refreshing – or perhaps destiny has played a wise part in keeping me away from such circles?).

E continues to struggle, and here’s the weird thing, he seems a bit depressed right now too. Not in the traditional depressed sense, but in his own Elliott way. His whole life, E has been an outgoing kind of guy. By that I mean E always, always, always wants to be with other people – going somewhere, interacting with people, exploring his world, reaching out to someone. Since his school challenges have continued to deteriorate, he has pulled inward more and more, and often just wants to spend alone time in his room playing solitaire or doing word finds. His beautiful bright smile is missing more and more and his confidence that he just naturally wears like his red super skinny jeans (constantly) is now missing most of the time. He keeps to himself, doesn’t interact with our extended family as much, and frankly is sort of cranky and sullen a lot. How much of this is puberty/teenage stuff, how much is ASD, how much is dealing with the difficulty of middle school and now attending 2 schools? I don’t know – but I’m worried about him, mostly because he can’t answer these questions, and he’s too close to the situation to recognize it even if he could.

Last night, I was up way too late, looking up possible vacation possibilities and giving up after my exploration of “Dollywood” at 1:00 a.m. Tears starting running down my cheeks as I thought about my E and the hardships he will face throughout his life because of this crappy genetic lottery named autism, and it made me sad. Maybe it was the thought of him facing adulthood in a few years and worried about all that stands in his way, maybe it was my funky hormones, or maybe it was the thought of having to watch people eat fried pork rinds at Dollywood, but I was a freaking mess.

And then it hit me. It’s all relative. Maybe E will never have an easy time of it at school. Maybe reading comprehension will continue to be elusive for him for his whole life. I hope not, but quite possibly, it just will. Is his life less valuable because he can’t answer “who” “what or “why” questions about stories? Hell, no! What’s important to me and to Tom is that he “get” who he is in the scheme of this crazy world, and care about others, and do good deeds and have a good work ethic, and laugh now and then. And guess what, we’re doing a crappy job of some of those right now because we’re so obsessed with his reading comprehension skills that his self-esteem is suffering.

One thing I love about E is that he completely digs girl power songs. Last week, I walked by his room and heard him listening to “Wide Open Spaces” by the Dixie Chicks. I couldn’t help playing that today, and thinking about him. E needs room to make some big mistakes as well – maybe more room than most. But when he smiles, it’s hard not to smile with him.

I don’t know if I’m doing what I was meant to do or not, but I do think that together, E & I might be able to help one another work through our respective blahs, and figure out what’s really important in life. I believe if you’re doing something you’re good at, and if you’re helping someone, it’s hard not to smile . . .